This article is part of our special report Unleashing the power of data.
The COVID pandemic has been a wakeup call on the need to share healthcare data in a commonly usable format. The European Health Data Space would boost health research and underpin the development of personalized medical treatments, says Padraic Ward.
Padraic Ward is Head of Pharma International Roche. Roche is one of the largest biotech company and leading private investor in health research in the world. He was speaking with Euractiv’s Digital Editor Luca Bertuzzi.
The development of the European Health Data Space is one of the priorities of the European Commission. What is the state of play?
I feel very optimistic about the discussions on how we will create a really strong base in Europe for healthcare data. I am very much encouraged by what we see coming from the European Commission. In particular, the move towards a European health data space is a very important one for several reasons.
Firstly, it will positively impact patient outcomes. An entire part of the Roche group is dedicated to making sure that meaningfully large-scale databases are used to personalize treatments for patients. The more health data is available for analysis across the EU, but also around the world, the more accurate personalized treatments will be.
Secondly, healthcare systems become more sustainable. If you can make sure that the right person is getting the right medical intervention at the right time, then you have better outcomes for patients and have optimized the resources for the healthcare system. Many of the indirect costs associated with diseases can thereby be eliminated or reduced.
Thirdly, it is important for us as a company and an industry to ensure that Europe is a strong player in global research and development of medical solutions. That is particularly dependent on how you can make health data interoperable and easily shared. Making data available helps to gain a better understanding of diseases and therefore to develop more personalised treatments. Thanks to those, we have already seen some great advances in cancer and other areas over the past years.
When I started working in this industry 25 years or so ago, Europe was an equal partner in healthcare innovation with the United States, but that is no longer the case. Things have moved on a lot in the US, and China has become a driver of innovation as well. What I see coming out of the European Commission over the past months really gives me confidence that there is an opportunity for Europe to regain its place as a pillar of innovation and to lead in some areas.
Health data is, of course, sensitive data. How can it be ensured that this data is shared in a way that is compatible with GDPR, Europe’s strong privacy framework?
Privacy and treating health care data with an appropriate level of confidentiality is a key point here. GDPR gives us a good base for doing that. There is still some work to be done on making sure that GDPR is implemented and interpreted in the same way across all European Union countries. Still, it provides a really strong base. After that, the next things that we need to put in place is an appropriate level of governance for the development of a common European health data space.
There is broad industry support for a single European body that would be responsible for setting the overall framework and guidelines for data governance, with the support of EU countries that would be responsible for making sure that the implementation takes place in line with those overarching principles. Similarly to the European Medicines Agency, which is the European agency responsible for the evaluation of medicines before they are made available to patients. EMA decisions are then implemented by the local regulator in every country.
We know that there is a lot of untapped data in Europe, that is not being shared, even though we would have the economies of scale. What is preventing this from happening?
There are three points here. Firstly, it is important to remember that this is all relatively new still. Only in recent years has it become obvious that being able to access meaningful data at a large scale would be helpful to enable better healthcare and better research and innovation. That has been driven by the development of information technology that has allowed us to analyse data in the way that we can do now.
Secondly, in Europe, as in most of the rest of the world, medical information is still very document-based. Most interventions are recorded in individual documents, and specific data points are not recorded separately in a way that makes it easy to retrieve them and combine with others later. That certainly slows down the ability to use specific pieces of data for research. To release the power of data that is untapped today, data should be recorded in a standard way that makes it interoperable, less focused on a single document and more on the specific elements of intervention, such as the patient characteristics, the diagnosis, the admission to a hospital or the diagnostic test, and its associated result.
Last but not least, within Europe we also have the fact that healthcare systems are run on a national basis, sometimes even regionally. We therefore do not have the flow of data yet that would provide the scale required for much of the work that we do. More work still needs to be done in that sense.
What do you see as the role of industry in the development of the European Health Data Space?
From an industrial policy point of view, I think it is really important that the private and the public sectors work together. We have different roles, but it’s in combining those in an appropriate way that gets us to the best results. In the private sector, we are investing more in research and development than ever before. And we all want to make sure that these investments go even further.
We aspire to not only improve outcomes, but ideally, even cure diseases. We are trying to ensure that patients get access to the right care when that is required, and that when that happens, it is very effective. The only way that can happen is if the whole health ecosystem works together, to look for opportunities that can prevent diseases, improve human health, and reduce inefficiencies.